S4E10 Coffee Break with Community Member Tessa Jane Miles

Geoff Allix (00:01): 

Welcome to Living Well with MS Coffee Break, a part of the Living Well with MS podcast family from Overcoming MS, the world’s leading multiple sclerosis healthy lifestyle charity, celebrating its 10th year of serving the MS community. I’m your host, Geoff Allix. Today, you’ll meet someone living with MS from our diverse and global Overcoming MS community. 

 

Our Coffee Break series invites you into the lives of each guest. They share their personal MS journeys and speak openly about their challenges and victories, large and small. We hope you find some common cause and a source of inspiration from the stories of these very special people. 

 

You can check out our show notes for more information and useful links. You can find these on our website, at www.overcomingms.org/podcast. If you enjoy the show, please spread the word about us on your social media channels or leave a review wherever you tune into our podcast. 

 

Finally, don’t forget to subscribe to Living Well with MS on your favorite podcast platform so you never miss an episode. So, get your favorite beverage ready and let’s meet today’s guest on Living Well with MS Coffee Break. 

 

Welcome to Living well with MS Coffee Break #30, where we are pleased to welcome Tessa Jane Miles as our guest. As always, your comments and suggestions are welcome, by emailing [email protected]. Tessa Jane will paint your day in colors galore, discussing how she uses art to raise awareness about MS. We hope you enjoy this episode’s conversation with her, coming to you straight from Devon in the UK. 

 

Tessa, welcome to Living Well with MS Coffee Break. We’re so pleased to have you on our program. The purpose of this series, to explain, is to get to know some of the diverse members of the community from around the world and today, you are in the hot seat. 

 

You’re effectively neighbors with me, because I’m in North Devon in the UK and you’re in South Devon. We’re part of the same broader Southwest UK OMS circle. So, a very special welcome from the Southwest of the UK. Could you tell us a bit about your day-to-day life? 

 

Tessa Jane Miles (02:11): 

Hi, Geoff, thank you. Yeah, hotspot. Well, I’m sat here with my coffee and my day-to-day life has changed slightly with the new addition of a dog. I tend to get up and take him out, which I’m finding quite exhausting, because I’ll often have a slow start. I find that if I get up when I wake and my body is ready, I have a better day than if I try to force things. 

 

So, I’ve been falling asleep in the afternoons and evenings, much to my husband Adrian’s amusement. I don’t get to see the end of any program because I’m asleep before it happens. I try not to have fixed days, but that’s kind of the key thing. It usually revolves around art or my garden or being outside. 

 

Geoff Allix (03:03): 

About MS, when were you diagnosed with MS and how was that? 

 

Tessa Jane Miles (03:10): 

Oh, it was really terrifying actually. I’d separated from my previous husband and I was on my own with the girls. We’d had an amazing time getting ourselves resettled and then suddenly, I started to have problems with my sight and it was deteriorating. 

 

It reminds me of The Matrix with Keanu Reeves, where it all started to pixelate and do strange things. By November 2008, I wasn’t safe to drive. I couldn’t see properly and I ended up having to stop teaching, because I wasn’t safe in the classroom. 

 

I’d been to Royal Eye Infirmary and they’d said, “Well, there’s three possibilities. There’s a brain tumor, you could have an infection which we can’t treat or it might be multiple sclerosis.” I’m thinking, “I don’t really want any of them, thanks. Is there not a fourth option?” 

 

So, I went through a very difficult six months, which I know now, from experience, I was lucky. Because many people are what we call no man’s land, in that they’ve had one relapse or they’ve had one sclerosis and you are called CIS or it’s just one incident, but then it happened again in April 2009. 

 

Then, I got the full diagnosis and I’d learned that it was optical neuritis. There was nothing wrong with my eyes. Started to learn and understand what was happening with MS. Life changed dramatically. I stopped teaching and I found myself alone and scared and bored, with no focus. 

 

I was playing Farmville and my sleeping hours were all over the place. I was harvesting my crops at two o’clock in the morning because I couldn’t sleep. It was all pretty rubbish, to be honest. I didn’t really know who to turn to or who to talk about it with. So, yeah. 

 

Geoff Allix (05:37): 

I think there is, because we live in the same county, I mean, I’ve felt that there really aren’t people around, are there? We live in quite a rural county. I mean, the OMS Circle has meant that I’ve met people. Until the OMS Circle, I hadn’t met anyone with MS. They’re few and far between, just geographically. Yeah, you don’t really feel connected, do you? 

 

Tessa Jane Miles (06:10): 

No, and people have very different ideas of what MS is. I mean, I’d come out of one relationship and I met Adrian. How do you explain to somebody that you’ve got MS? I can remember someone saying, “Well, yeah. If you were married, you’d just get on with it. But who might want to commit to somebody who, do they need all that? What’s their experience of it?” Yeah, it was tough. 

 

I liked to dance. I was doing salsa dancing and I found that that helped keep me fit. I had quite a good diet before, but I didn’t know anything about it really. I’m an artist and a designer and I make fabrics. One of my real joys is to take something that’s been discarded and make it precious again. Which is a bit of a metaphor, really, for myself, in that I felt discarded. 

 

Whereas OMS has helped me to feel precious again, but we’ll come to that a bit more later. But the important link is that I needed to make was buttons. I went to meet an upholsterer who had a machine to do them. His name is Bruce, Bruce Jacks, and he’s in our OMS Circle. 

 

He’s not fully OMS, but he values being able to feel connected, which is something else that we are aware of as ambassadors. That there is a degree of difference between purists and people trying to build up or trying to find a balance that they’re comfortable with. 

 

Then suddenly, he just blurted out about having MS and I was gobsmacked. He said, “Oh, I haven’t told you that before, have I?” I said, “Well, no. I’m gobsmacked because I have it too.” It created a bond instantly, and this is something else that we find on our Circles. 

 

That, because you have this commonality and you have this understanding, this innate understanding of what it is like to have MS, that you don’t have to explain that, because we all get it. That’s really, really important. But it was him that took me to The Merlin Center at St. Austell, which is one of the specialist centers we have in Devon and the Southwest. 

I met Jeremy Hobart, or he was Dr. Hobart then, and I learned about the OMS program. I met Colin Bannon and he said, “Well, we’ve got a group in Plymouth. You can come.” But also, very importantly, this lovely lady stood up holding the book, saying how she couldn’t walk and now she was walking with sticks. How it had changed her life. Her name was Angela and she’s also in our Circle. So, it’s kind of drawn all these threads together and tied knots and helped… 

 

Geoff Allix (09:19): 

What was the key thing that tipped you into thinking, “I’m going to follow this program”? Because I mean, there’s some doctors fully supporting of it. But generally, there’s a, “Well, yeah, healthy diet’s good for you.” But, full-on support of OMS is unusual, to say the least. 

 

Tessa Jane Miles (09:46): 

Yeah, it is, isn’t it? I just thought it was a no brainer, in that it’s good for you. There’s nothing in it that suggests that it would be bad for you in any way, shape, or form. It’s a lifestyle choice, it’s not a quick fad thing that’s going to fix you. You do it and you’re on it and that’s for life. 

 

Yeah, I just thought, “I’m not going to lose out here. It could help me.” The scientific evidence was obviously incredibly important because it felt like that there was real substance behind it. As I say to anybody that asks me about it, I say, “Well, it’s not hard to give up something which might mean that you have a better life. Longevity, physicality, mental, all of it.” 

 

I was really struggling with fatigue and energy and strength. I thought, “Well, if this helps those things alone, that’s going to be good.” So, I had a big last supper. I had my roast chicken and my potatoes and everything that, at the time, I thought I wouldn’t be able to have. But, as you get better with the diet, you learn ways around it. 

 

Yeah, and then I started, cold turkey. Within the first week, I was in tears, missing so many things. Had the wrong attitude in my head about what I could have. I didn’t chuck everything out. One of the things that the book suggests is you chuck everything out that’s not OMS friendly. I couldn’t afford to do that, it wasn’t practical. So, we’ve sort of used things up a bit, but overall, I embraced it. 

 

Geoff Allix (11:45): 

We are actually quite lucky, in that we do have a neurologist in Devon. Professor Hobart actually does give out the Overcoming MS books. 

 

Tessa Jane Miles (11:54): 

Yeah. 

 

Geoff Allix (11:54): 

So, there are some neurologists out there who are very, very positive for that. I mean, he’s not my neurologist, but I’m very aware that he’s very pro Overcoming MS. This may be somewhat ageist, which I shouldn’t say as someone in their fifties, but the older neurologists might be more set in their ways sometimes. [inaudible 00:12:16] that a newer generation is coming through that’s accepting of lifestyle factors. They seem to get more and more press these days. 

 

Tessa Jane Miles (12:25): 

Yeah, and I think also that they’re beginning to realize that the medical profession as a whole is far more positive about holistic medicine and combined medicine. At no point do they ever say, “Don’t have your meds.” It’s a combination of things and that’s very powerful too. 

 

Although obviously, we’ve got examples of people who’ve been able to give up their meds. Because they’ve been on it long enough and they feel that they’ve got control of it and they are living a very different life. I know, probably six years now I’ve been doing OMS, that I am stronger. I am fitter. My fatigue is improved. 

I mean, we all have bad days, don’t get me wrong. There are days when I don’t want to step out the door and can’t face the world, because I feel that you tend to put up this facade. People will say, “Oh, how are you?” I once stupidly told them exactly how I was. I watched their face completely go blank and drain of color. 

 

I thought, “Ah, right. This is one of those British things.” Like you say about the weather, “Oh, weather’s good, isn’t it?” “Oh, I’m fine.” We’ve got a bit of a joke in our family that fine means Freaked out, Insecure, Nervous and Emotional. It comes from The Italian Job, with the Minis. She’ll say, “I’m fine.” I’m thinking, “Yeah, I am fine.” And that… 

 

Geoff Allix (13:52): 

Yeah. For people who are not from the UK, probably the most common greeting is, “How are you?” It’s almost not intended as a question. 

 

Tessa Jane Miles (14:02): 

No, they don’t actually want to know how you are. 

 

Geoff Allix (14:06): 

Yeah, it’s just a greeting. It’s just almost like saying hello. Yeah, you’re constantly being asked that. I always think that “Are you actually asking how I am or are you just saying that?” Because sometimes they are asking how you are, because you say, “Oh, yeah.” Or just not even really answer it and they go, “No, but, how are you?” [inaudible 00:14:23] 

 

Tessa Jane Miles (14:24): 

Sometimes I’ll say to people, “Is that a real how am I, or do you just want to check that I’m okay?” Then, some of my closer friends will say, “How are you? No, really, how are you?” Then it can become a more involved conversation, but it’s not very often that happens. It’s usually, “Yeah, I’m fine.” 

 

Geoff Allix (14:43): 

One thing I wanted to ask is how you feel the OMS program connects with people with differing abilities. For example, how might someone who has more of a physical challenge relate to the OMS program? They maybe have difficulty walking, for example. 

 

Tessa Jane Miles (15:01): 

Well, this is my big project, my big thing at the moment. I realized, through listening to Alison Potts, and mindfulness, it’s the thing that, after the diet, I found the most difficult to do. So, I’ve really been focusing on mindful activities and I’m aware that, or I feel that people with more physical disabilities could feel more on the outside. 

 

As we see lots of things about being strong, MS fighter. Anything on social media, it’s about, “Oh, I’ve done this and I’m beating that.” I’ve watched various TED Talks and I’m focused much more on mindfulness and understanding the power of that. 

 

I’m just doing an amazing painting course with an artist at the moment and it’s so mindful and it’s so meditative. Today, we were doing taste and color, so it’s something that’s very, very important to me, that we are all inclusive. Whatever your ability and however physically or mentally taxed you are, I feel OMS can help. 

 

I’ve talked to people who can’t run, who struggle with walking and they feel better. So, I’m trying to raise money for OMS. I’ve set myself a 10 for 10 project and I’m in inviting anybody to join me with this this year. We’ve got a 10 for 10 JustGiving page. 

 

If you knit, if you sew, if you whittle, as we have Sean in our group who whittles spoons, beautiful they are. That you can find your way of doing 10, your fantastic beach rides on your trike, let’s do 10 laps, or maybe you can swim better than you can run if your weight is taken off you, then do 10 minutes. 

We can all set ourselves goals that can be positive and enhancing, but they’re real. They’re smart, as I would say, SMART targets. Small, Measurable, Achievable, Realistic Targets. I really feel that you can find part of the OMS program that is most comfortable with you. 

 

You’ll know, Geoff, I’ve had a lot of problems with my feet and actually, walking is incredibly difficult. So, I’ve now got an electric bike and I can cycle better. There are ways around it. I would encourage anybody who’s struggling to contact anybody. Contact us, contact OMS. Find their own Circle because it could be you do 10 stitches. 

 

I certainly find, in the winter when I’m lower, that if I’m sitting and sewing and doing little things like that, that it keeps me active. It keeps my fine motor skills going. So, I think there is an answer to everyone’s challenges. My pet project is to try and help those people find their way through. 

 

Geoff Allix (18:26): 

Could you tell us about areas where you might have had problems adopting OMS? Did it all go smoothly or were there bits that were hard to adopt? 

 

Tessa Jane Miles (18:36): 

Well, definitely the diet challenged me for the first couple of months, in that I was a meat eater. My passion for cheese, I still struggle. Sometimes I have to pass that block of cheese over, say, “You grate it, because I will just devour it if you leave it under my nose.” Yes, there are areas that are difficult. I’ve lost the thread because of my good old MS. Ask me the question again. 

 

Geoff Allix (19:03): 

It was just about [crosstalk 00:19:06] also, I want to apologize to listeners because outside our house, the gas mains are being replaced. So, there’s lots of drilling noises that you might be able to hear in the background. 

 

Tessa Jane Miles (19:15): 

No problem. 

 

Geoff Allix (19:17): 

Apologies for that. It was just about, yeah, things that you’ve had trouble adopting in OMS. I mean you mentioned [crosstalk 00:19:23] How did you overcome those diet issues? 

 

Tessa Jane Miles (19:27): 

Got the book, started looking more carefully at the book. Having met other people and sharing recipes, sharing ideas. It takes me twice as long to shop now, because I’m reading all the labels and because I’ve got glasses, it takes longer. Practice, basically. Good old, simple practice. That, the more you do it, the easier it gets and the better it is. 

 

By reinforcing things, I can shop now, most of the time, and I know which things I can and can’t have. Where I need to go. I’ve got particular shops that I go to for different things. I absolutely love vegan mayonnaise, which I can only get in Sainsbury’s, for example. I’ve just found some new baked olive oil crisps in Tesco’s, which were a bit of a win-win for a naughty treat. 

 

Persevere, talk to others, that’s what’s got me through. Being part of a family, being part of the OMS Circle and sharing those things has made a huge difference. But also, the mindfulness has been a real problem, and meditating. I have to confess that when I first started to do it, I was asleep within 10 minutes every time. 

 

When I came up to Edinburgh and heard Craig’s voice and I had to smile to myself because I thought, “Oh, bless. He’s the one that’s been sending me them.” [inaudible 00:20:54] But, listening to Alison Potts about finding different ways to be mindful, and that we are not designed to sit like Buddhist monks and that has just been brilliant. 

 

That’s what I’m actually starting tomorrow. So, today is the last day of February, this podcast won’t go out until later, but Mindful March. I’m trying to show different ways of meditating. When you go out, find 10 things. If you can’t walk, then, like our dear Angela does, goes out in her little motor scooter. Listen for 10 birds. Listen and you’ll be in the moment, you’ll be present. 

 

This painting course that I’ve just been doing, again, it’s about how you apply the paint and being mindful of the direction. Today, we ate fruit. Well, I ate fruit, somebody else had chocolate and I was like, “No, don’t go there Tess.” Yeah, just being much more alive, now, in the moment. But it’s taken me a long time to start to get this. It’s about repetition, about practice. 

 

Geoff Allix (22:14): 

You mentioned art there. Could you tell us a bit about your background as an artist and relationship to art? 

 

Tessa Jane Miles (22:22): 

It’s the thing that really keeps me going, to be honest. I trained as a fine art textiler, I trained as a weaver and a craftsperson. I ended up teaching because of my family and children, but I’ve always done my own work and continued to do my own work. 

 

Then, through teaching and through studies, I realized that it wasn’t enough to just make work that looks nice. It had to have an underlying meaning, a story. It had to have a conceptual element to it. There was a lovely quote today where it said, “You just end up pushing pretty paint colors around the page.” That’s not enough for me. 

 

My work at the moment is about being mindful, it’s about what it’s like to have MS and to try and get those feelings, those emotions across. But, still in a way that is positive, uplifting, to tell the story. It will be part of this work that I’m doing in May with Delamore Arts. Where they are supporting OMS as their charity. I’ve got a £10,000 target… 

 

Geoff Allix (23:40): 

We’ll go onto that in a minute, but can I just ask, before we go on to that, about people with MS using creativity. Not, well, art, but broader creative arts as one of the tools to boost mindfulness and manage their MS condition. Could you share a bit about that? 

 

Tessa Jane Miles (24:05): 

Yeah, absolutely. Basically, you are sitting predominantly. I mean, some people stand when they paint and what have you. But, because you are focusing on what you are doing right now, the marks that you are making on paper or the stitches that you are doing, your breath slows, your mind calms. 

 

You can find that you are in a very meditative state. Even if you’re just mixing colors, you are focusing on what’s happening right there, right now. So, you are therefore meditating. You are therefore being mindful and you are practicing mindfulness. 

 

I can start with music on, which again, is another way of listening. Listening to music is another mindful thing. It takes you to a different place. It takes you to somewhere outside of your overthinking, your worrying. It will lower those stress levels and it will reduce those things. 

 

Yeah, you can get your knickers in a twist about not being able to do something, but that, again, it comes with practice and getting better. Picasso said, “I practice the things I can’t do until I can.” That’s the key element about mindfulness. Find a way. 

 

As Alison says, “If you are angry, how can you expect to sit calmly?” You need to do something energetic. So, going out for a walk or putting some really loud music on. During COVID, when I was really struggling, I was listening to Music by Humans, Gary Barlow. It was just full of percussion and saxophones and joyful. 

 

It would knock those blues out and help bring back the joy of living. That’s what I would recommend. Anything that’s creative, writing, music, involved in any of the senses. If you cook and you love to bake, then take time in thinking about those ingredients that you’re putting in. The taste and the flavors and the feel of the mixing. Anything that we do in that form. 

 

Geoff Allix (26:24): 

Back to the Delamore Arts exhibition. You’ve been instrumental in setting up Overcoming MS being the charity partner for this event in May. 

 

Tessa Jane Miles (26:24): 

Yeah. 

 

Geoff Allix (26:37): 

Could you tell us a bit about it and how that connects with your art as healing? 

 

Tessa Jane Miles (26:46): 

They’re celebrating 20 years, we’re celebrating 10. So, I pitched to say, “Would you consider us?” And they said yes. The reason I did it was because World MS day is the 30th of May, Delamore Arts runs throughout May. It seemed serendipitous that they be together. 

 

It’s about sculptures and a trail in the gardens, which is about being outside. Gardening is another mindful thing. It’s about a community, they bring a lot of different people together and that’s one of the World MS Day focuses, is community. How being in outside spaces helps calm and heal us. It’s about being creative. 

 

I mean, Delamore Arts, there’s literally something for everyone. They have so many diverse styles, artists, things coming in. I would challenge anyone who said that they didn’t like anything there, because there’s crazy things to really profound things. To really beautiful landscapes, to portraits. There’s literally something for everyone. 

 

I just thought, “How perfect is this match? It’s ticking all of our mindful boxes, it’s ticking all of the community boxes. It’s a great place to gather and it’s a great place to talk and sit gently.” So, we are creating or I’m creating a space where people can come and talk. They can learn about MS, they can ask questions. 

 

They can be with people with MS. We can sit and sew. I’ve got artists going to come in to do demonstrations, or little workshops for people to come and join in with so they can learn. They can see and they can be immersed in something mindful and beautiful. Hopefully, the weather won’t be too rubbish so that we can enjoy the outside space as well and raise money for OMS. 

 

Geoff Allix (28:48): 

Is there anything for people who can’t physically get to South Devon? 

 

Tessa Jane Miles (28:55): 

Yes, there is. We’re going to do a postcard auction. It’s a silent auction, many of the artists that are taking part, and even George Jelinek is doing me something. I have a lovely card from Grazina. These cards will be online and they’ll be at the show and they can be bought. 

 

What we are asking is that you propose a fee, amount, a donation. As the month goes through, if you’re outbid by somebody else, you might have to raise it. You can buy these postcards; I can post them out to anywhere in the world. So, everybody can be part of this thing. 

 

I’m looking for people to knit squares for me, to do bunting and things like that. Again, they can be knitted wherever you like and they can come in. Everyone can take part. The other thing is, if you can’t take part, then if you’re on social media in any form, Twitter, Facebook, or Instagram, share it. Get it out there, because the more people that see, the more people that bid for these postcards. 

Also, I don’t know if you can buy online, but you can certainly phone up afterwards if you see something that you really love in the show. Or you see it on the Instagram because I’ll be covering all of it throughout May. Yeah, and we will ship it to you. If you want it, we’ll get it to you somehow. 

 

Geoff Allix (30:24): 

It could end up being a famous artist. 

 

Tessa Jane Miles (30:26): 

It could, yes. There are some international and really big names that I’m hoping will contribute. I can’t say exactly who and what yet, but I have lots of promises. There’s some sculpture being donated for me to sell. Yeah, I’m really excited. Join in, spread the word, and help hit that target. 

 

Geoff Allix (30:50): 

A bit more about the creative side, and this is something that I hadn’t heard before, but that you are quite interested in brain scan-based AR. 

 

Tessa Jane Miles (31:01): 

Yeah. 

 

Geoff Allix (31:04): 

I work in IT, so I’m aware of AR, but this, yeah, for an art space, it sounds very futuristic. Tell us a bit about that. 

 

Tessa Jane Miles (31:16): 

Well, I’m very lucky to have worked with Plymouth University’s [inaudible 00:31:21] team a project to do with balance. I said to them, “Oh, if you want an artist to illustrate any of it and all your findings, just say.” It was a total off-my-head type comment. Didn’t really think anything of it. But, several months later, they took it up. 

 

I’ve been working with them and I’ve been using my MRI scans to create screen print slides. I’m putting them together and creating artwork that’s a combination of my scientific brain scans and imagery. It looks like, I mean, for instance, trees, to me, look like the nervous system. 

 

Obviously, trees are all connected and they have their nervous system. So, that goes brilliantly with the fact that all of us OMS people are connected and our nervous system is attacked by ourselves. There’s this conceptual story and that’s why I’m saying it’s not enough for me to just paint pretty pictures. 

 

I’m totally absorbed in this body of work that’s to do with that. I’ve created an MS Chair. It’s all my brains and scans and imagery and it’s on an upholstered chair. That will be there. That’s why we’re encouraging people to come and visit and to join in and see what it’s all about. 

 

So, they will be present and they’re going to be part of the show too. They’re developing an app, which is another trial that I’m doing. Yeah, so we’re trying to get all of these different things together and use the art to illustrate and tell the story. That’s what my work is all about. 

 

Geoff Allix (33:07): 

With that, Tess, thank you so much for being on the Living Well with MS Coffee Break and allowing the community to get to know one of its own a bit better. But we do have one last question, which is a tradition that we tend to ask people. If you tapped into your experience with MS, and specifically OMS, for a nugget of wisdom that might help new people adopt the OMS program, what would that advice be? 

 

Tessa Jane Miles (33:32): 

Ooh, to realize that it’s not necessarily a cloud, it could be a silver lining. It’s because of my art I’ve found that living with MS has enriched that. It’s added to it. Being part of a community and joining with the Circles has given me a safety net and a support system. 

To not be afraid to reach out. Any question is not a daft question. If it’s bothering you and it’s worrying you, ask it. Someone, somewhere, will try and help you find the answer. 

 

Geoff Allix (34:21): 

That’s what we say in IT. I remember someone saying that the only daft question is the one you didn’t ask before you crashed the entire system. 

 

Tessa Jane Miles (34:30): 

Absolutely. 

 

Geoff Allix (34:32): 

Which kind of applies to this as well. 

 

Tessa Jane Miles (34:35): 

Yeah. 

 

Geoff Allix (34:36): 

With that, thank you very much for joining us. 

 

Tessa Jane Miles (34:39): 

Oh, you’re very welcome. Thank you for having me. Yeah, join my 10 for 10. Get involved. 

 

Geoff Allix (34:44): 

Yeah. All the links are in the show notes, have a look and you’ll find links to everything there. Tessa’s Instagram, Twitter, Facebook, and Delamore Arts are all listed in the show notes. 

 

Tessa Jane Miles (34:55): 

Thank you. 

 

Geoff Allix (34:56): 

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